I had my last EECP treatment last Monday. Thirty five hours of treatment, plus twice that in driving time. We had pretty much forgotten what it was like to have me home at all. I saw Laura and Eva for a couple of hours on Monday and Tuesday and saw the older kids on Tuesday nights and that was it. I left the house every day as everyone else was getting up and got home after everyone had gone to bed. It was a hard seven weeks.
I took few pictures on my last day. My phone takes horrible pictures inside, so please excuse the quality.
The first is me with Shauna and Ricky, two of the techs who ran the treatments. Getting to know them was definitely one of the highlights of the treatment. I got to see them pretty much every day, along with another tech named Julio. I loved talking with them every morning and I really miss getting to see them.
This is me strapped to the bed as Shauna sets up the treatment. The facility had eleven beds, ten of which were in the main room. One was in a private room, and by luck of the draw, that was the room I ended up in. If you want to learn more about the treatment, detailed information and videos are available here - http://www.eecp.com/
The first two weeks I felt horrid. The third week I got dramatically (for me) better. Enjoying having some energy, I pushed myself and ended up crashing and burning within a week. I never really recovered from that. With cardiomyopathy, you have to walk a fine line between a beneficial amount of exercise and too much exercise, which makes you exhausted and increases water retention. The EECP treatments were similar to physical exercise and an hour a day, five days a week, was significantly more than my body could maintain. I started gaining weight (water retention) and by the end of treatment had about a gallon of extra fluid, mostly in my chest and abdomen, but also in my arms and legs. I weighed as much as I did when I delivered Laura and Eva. My cardiologist doubled one of my diuretics and I lost a few pounds.
By the last treatment, I was run into the ground. When treatments stopped, I crashed. I left work early for the first time ever on Wednesday and didn't go in at all on Thursday and Friday. Rob went into work late on Wednesday because I was doing so poorly. Our sitter watched the kids Wednesday, Thursday, and Friday afternoons, even though I was home Thursday and Friday. Megan stayed home from school on Friday and watched Eva and Laura so I could sleep as late as possible. She hasn't missed school almost at all this year and it was a day off for her too, so it worked out well. I barely left my bed from when I got home on Wednesday evening until Saturday afternoon.
I'm slowly getting better. We're hoping the benefits of the treatment (which can take up to six months to become apparent) will be worth everything we're going through. Either way, we had to try. It was really disappointing that I didn't see the dramatic improvements I saw in week three continue through the treatment.
More than anything else, this has made both Rob and I realize that this is a long term issue. I think we were both just hoping for quick resolution, either due to medication or treatment. We figured since they caught it so early, it would be easily fixed. We are coming to terms with the idea that this may never resolve, or it might take years to heal. That has been really hard for both of us.
We're making more permanent changes. I'm taking even more sodium out of my diet. I'd rather be on almost any diet other than a low sodium diet. Food without salt tastes like crap. On the plus side, it makes it easy to consume less calories! I eat less than 2000 calories a day, often significantly less, but I'm gaining weight. It's a side effect of cardiomyopathy. Yay. According to diet calculators, I should be eating 4500+ calories a day to maintain my current weight. Apparently those calculators are not made for those with heart failure.
We're so grateful to have someone like Kala to do the things I used to do with our kids as I can't do them anymore. She takes them on walks and to playgrounds. She makes playdoh and bubbles with them. She lets them help her cook and makes cookies and "dirt" out of chocolate pudding and oreos and gummi worms. I'm so glad the kids get to experience things like that. I used to do things like that, but can't now.
We've adjusted our schedule so Rob takes the elementary kids to school, which lets me sleep an extra two hours a day. Rob and the kids do all the housework. I cook meals whenever possible, although Rob now is in charge of meals about half the time. I can still do things like balancing the check book and paying bills as that can be done from bed. I'm able to go grocery shopping about half the time, although I go with Rob now in case I start to feel bad while we're out.
I've permanently stepped back my hours at work. I work Wednesdays and Thursdays, half days on Fridays, and Monday evenings. I'm so grateful I work in private practice where my schedule is flexible and that I have a boss who not only supports me when I need to take time off, but encourages it. I'm so grateful that so many of my clients are ones that both James and I see and that James is more than happy to fill in for me if needed. I don't think any other type of job would have worked. I love working though and it gives me a chance to think about something other than myself. At home, I'm surrounded by things I can't do that I want to do. Not that I don't want to spend time with my children and Rob, but it's nice to have somewhere that I can go that gets me out of the house and where I can actually do something. I've withdrawn from the TCAP planning board. I've skipped PDI nights for the last two months and won't make it this month either. This is our life now.
There have been some amazing benefits though. The kids are much more self-sufficient. I can't micromanage everything anymore, which was something I did. They've had the opportunity to grow their own wings much more so than they would have if I hadn't gotten sick. Rob and I get to spend a lot more time together now. He likes taking things easy and I preferred being more active, so my current physical capabilities allow us to hang out and relax.
I'm glad our roles aren't reversed. I'm afraid I wouldn't handle Rob being in this position nearly as well as Rob has handled it. He continues to amaze me with how supportive he is. Not only does he never complain about me not being able to do almost anything I used to do, but he doesn't even seem to think complaints about it. He has an unending supply of patience for me and is always there when I am having a hard time. I've loved growing closer to him and spending more time cuddled up against him, watching shows or talking.
We are so lucky he has the job he does. Our insurance is amazing and hearing the stories other cardio patients tell about the bills that have piled up makes us incredibly grateful for that aspect of his job. His boss has been amazingly supportive and lets him take whatever time off he needs. He works really hard not to abuse it, but it makes it so much easier.
This sucks, but I don't think we could have been in a better position if it had to happen. We're still hoping that I will get better at some point, but that doesn't seem to be in the cards as of right now, so we're playing the hand we've been dealt to the best of our abilities :)
